A PSA for All Women Dealing with Endometriosis 

I was officially diagnosed with Endometriosis on September 16th, 2019. It’s a day I won’t ever forget because it’s the day I found out that I most likely couldn’t have children until I got it treated. Now there are plenty of women that have successful pregnancies while also having endometriosis, however, most don’t and with the frequency of my symptoms, my doctor informed me that it wasn’t a good idea to even try. 

(Now keep in mind, I am 22 at the time of writing this and even though I am not currently thinking about having a kid, doesn’t mean that in a few years from now I don’t want one.) Now if you are like the average person, you would be saying “well Hannah, why are you worrying about not having kids now when it may be a few years before you want to have one?” Because the treatment time for Endometriosis is 15 to 18 months. For the first round. 

Meaning that if I want to have kids in 2 years, I need to get treated NOW. 

For those of you that have no idea what endometriosis is, it’s a disorder that occurs in women that have an overproduction of estrogen in their bodies and as a result, the tissue that lines the uterus (and sheds during the menstrual cycle) overgrows inside of the uterus and outside as well. Because this tissue still sheds no matter where it is, it causes scarring of the pelvis and is extremely painful. Like, drop you to your knees in the middle of the grocery store painful. 

I had NO idea what Endometriosis was let alone that I had it. 

I found out from a drug commercial that it was even a thing. “If you have heavy painful periods, pain in between periods and pain during intercourse then speak to your doctor now as you may have endometriosis.” 

In 2019, I found out from a drug commercial as I was CLEANING MY CLOSET that I may or may not have a disorder that would cause me pain until I got my uterus removed? How is that even possible? 

That is a story for a whole nother time but what I am here today to share with you is exactly what the endometriosis symptoms are and encourage you to speak with your gynecologist as soon as you can if these are symptoms you are experiencing. I am also here to share how DIFFICULT it has been for me to even get medication as well as share some of the options I was presented with when I was diagnosed. (I am not a doctor, I am just sharing my experiences.) 

When I was diagnosed with endometriosis + told I shouldn’t even try to have kids until I started treatment I was a little out of it. You know that scene in the movies when the main character is sitting at the doctor’s desk when the doctor gives them the bad news about a condition and they can’t really hear much just see the doctor’s lips moving? That was me. Especially because I had JUST gotten my gallbladder removed and I said to my mom as I was waiting for the nurses to come to get me that I wanted to see how good my eggs were and if I could even have children. (Thanks to an episode of New Girl) I honestly thought it was a really ironic game the universe was playing with me. 

Anyway, I was presented with 3 options: 

  1. Hysterectomy. Chances of having a kid: 0 + I would have no uterus at 22. 
  2. Shots that would put me into pre-menopause at 22. Chances of having a kid: 0
  3. Take a 15-18 month treatment off and on until I decide to have a hysterectomy. Chances of having a kid, better than the other two. 

There was a fourth option that involves surgery but after my gallbladder removal, I wasn’t ready for that so I went with option 3. 

I was already on birth control pills for years before discovering I most likely couldn’t have kids anyway but the first step to getting this new treatment was changing those pills. Going back to what I said earlier, endometriosis has to do with the overproduction of estrogen in a woman’s body. Birth control pills work a small bit to regulate that overproduction but it’s not enough to stop the worsening of the disorder. The new treatment I needed to be on to reduce the pain I was experiencing, involved me getting off ALL hormones as the new treatment was going to regulate the production of my estrogen by itself and it couldn’t have other things bothering its process. 

That was when I was told I needed to get a non-hormonal IUD. I won’t go into it but it is a device that is inserted into your uterus and was one of the most painful experiences of my life. (not as bad as endometriosis off birth control with no other hormone regulation but it was bad) 

Now that the IUD is in and isn’t giving me any more issues, the next step is GETTING the actual medication for treatment. This is where the fun part comes in. 

The insurance company is doing two things. One, saying that my symptoms don’t match their “criteria for medication approval” AND saying that my medication isn’t covered by the current plan. So now we are in an ever back and forth fight with the insurance company and the drug company itself to get me on this extremely long treatment as soon as possible. 

And I do want to mention that I am not in any way shape or form trying to get sympathy or have people “feel bad for me” I want to share my experience so other women out there that may be experiencing the same things knows they aren’t alone. 

Endometriosis isn’t talked about and that pisses me off. Half the population thinks that endometriosis doesn’t exist, that women are lying, and that makes my blood boil. So if you are someone experiencing the symptoms below, then PLEASE speak with your gynecologist and work your way to getting treatment. The medication I am working so hard to get is called Orilissa and if for some reason your insurance company won’t approve the coverage, you can get it directly from them. (It just takes a bit longer) 

The symptoms for Endometriosis include (thanks to mayoclinic*):

  • Painful periods (dysmenorrhea). Pelvic pain and cramping may begin before and extend several days into a menstrual period. You may also have lower back and abdominal pain.
  • Pain with intercourse. Pain during or after sex is common with endometriosis.
  • Pain with bowel movements or urination. You’re most likely to experience these symptoms during a menstrual period.
  • Excessive bleeding. You may experience occasional heavy menstrual periods or bleeding between periods (intermenstrual bleeding).
  • Infertility. Sometimes, endometriosis is first diagnosed in those seeking treatment for infertility.
  • Other signs and symptoms. You may experience fatigue, diarrhea, constipation, bloating or nausea, especially during menstrual periods.

As I have said a few times now, if you are experiencing any of these symptoms, PLEASE go visit your gynecologist sooner than later because it may be nothing but it may be something. No person, man or woman should have to live with the pain endometriosis causes. And I say that because I currently experience it. 

Until next time, 

Hannah